Sneaking food

[FMmom]

How do I make my daughter take this diet seriously? Does she even need to take it seriously? I keep thinking that she'll ultimately want to follow it because she'll grow tired of the stomach pain and feeling lousy, but so far, no.

I sympathize with her because over the last several years I've been encouraging her to eat all these foods that I now tell her she cannot have. She was diagnosed with atypical CF when she was seven and her doctors tell me that it's absolutely vital that she put on weight. Her body mass index is in the 1st percentile and they want it at 50%tile at the lowest, preferably in the 75%tile. So I demanded kindly asked her to eat salami, baloney, cake, ice cream, candy bars for snacks, etc etc etc.

Over time, I stopped buying a lot of things, like salami, because I thought she changed personalities when she ate it. I couldn't figure out what was doing this to her, but I stopped buying anything with HFCS, food dyes, and nitrates.

I began baking lots of high-calorie snacks. Ironically, it took a lot of effort to get her to eat cookies and cake because she preferred fruit and vegetables -- but I eventually got her to love all that, only to take it away. Sigh.

I do stock granola bars and packets of nuts for her Dad to take to the office for his breakfast. I have a few snacks for her sister that she is not allowed to eat until Kaelin goes to bed. No one gets to eat anything in front of Kaelin that she cannot have herself. I keep everything on top of the refrigerator. Kaelin has found it all. She took 3 boxes of granola, opened every packet and dumped it in her chest. I can't figure out if she did it in a rage, feeling that if she can't have it no one should. Or did she open everything so that she quickly have little nibbles when no one is looking. (That was her story, anyway...)

I don't know whether to just drop the whole idea of following the FM diet or buy a lockbox for everyone's non-FM foods.

I hate this!!!!!!!!!!!!!!

[Charlie Arnold]

The sneaking the food is the hardest, Meg does alot of it now, luckily as there are only the 2 of us in the house it does mean I can just buy suitable food for her and be healthy myself!!!!!

The best thing I've decided after a lengthy heated discussion about this on the HFI board is to try and make sure she has a few safe treats and that seems to keep her happy. They will get cross and frustrated but you just have to try and keep calm and positive about it. Involve her in as much of the preparation and cooking of the food. Meg is fab at making her own cake now. The problem with people not eating in front of her may not work as in real life this is always going to be a problem. You just have to maybe have a family policy where everyone has "treat" time but their particular thing. I'll try and google some companies that make safe stuff so you have some ready made foods and biscuits. We are spoilt in England with the "Free From" range in the top supermarkets.

Is Kailin's body weight low because it is fighting the wrong foods.

[Charlie Arnold]

Try this link,

celiacdisease.about.com/od/glutenfreefoodshopping/ss/GFgrocerylist_2.htm
Trader Joes's looks a good bet if you have one of those near you.

I'll post this in safe ingredients too. Obviously you will have to double check ingredients. Sherri might have some ideas too, I think she is in America

[catherine]

Is her dad able to keep his food at work?

I work with a lady her due to her children issues with nuts, only eat nuts at work and store her supply to her desk drawer.

Regards
Catherine

[FMmom]

I'm always telling my kids to stop making excuses to justify their behavior -- but here I go... Hah!

Charlie, I do agree that Kaelin is going to have to learn to deal with her food issues because she's going to keep running into these foods. But I couldn't stand to see the look on her face when her dad and sister were eating ice cream packed with brownie pieces and candy and Kaelin ate plain vanilla... I thought she should have one safe environment where she didn't feel so left out. I thought it may teach her sister a little compassion as well -- but so far, Kenna tends to take all of the gluten-free items that Kaelin couldn't consume in one sitting. (and considering how expensive those products are, it kills me!)

I have asked my husband to take the food into his office but he swears they have some sort of rodent problem and he just doesn't want to have food in his office, even food that in all the excessive wrapping. Sigh.

I have tried getting Kaelin at least marginally active in her own food selection and preparation, but she's not terribly interested. Everything hurts her stomach, everything. I think that mentally, she has just given up the idea that certain foods will make a difference in how she feels. Yesterday I checked over the list of salicylates and saw that cabbage was reasonably okay, so I gave her coleslaw, one of her favorite foods. She was whipped into a frenzy -- enough to actually get in trouble at school, which almost never happens. Doh, cabbage is on the avoid at all costs, never ever serve list for FM. [facepalm]

We know she has outrageously high numbers for FM; I haven't tested for (or even if there is such a test), but I'm reasonably certain she has salicylate sensitivity; and I'm still trying to figure out lactose, gluten or if she's low on B-12. I feel like all I do is say no to everything she loves -- all the things I taught her to love -- and it seems like it's all for nothing because she always has stomachaches and her legs hurt and her fingers tingle...

I know there is no magic solution here, I'm just wondering how much everyone lets their kids go outside the diet parameters... The doctor tells me there is no harm in doing so, but I have my doubts. If she drinks milk, she is constipated. Otherwise she is pooping three times a day. Neither condition sounds like the norm. Somewhere in all of these foods issues must be an explanation of why she can't gain weight... So frustrating!

[Charlie Arnold]

OK, so turn it round and make the rest of the family take turns in restricting to Kaelins food, using as much home cooked as possible to save money. Maybe some days they have her food, and others theirs. I know it must be hard with different diets in one family but everyone has to learn to give and take.

Toppings for ice cream could be healthy for the whole family ie put safe fruits on top instead of candy - lets face it that is heaps healthier for everyone. Time to get tough I think, call Nanny 911!!!!! Stick to your guns - you are in charge of the kitchen.

I very rarely stray from Megs diet as the consequences just aren't worth it!!!!

Private message me a couple of days food that Kaelin eats when you have time and I'll see what sense I can make of it all.

[FMmom]

Yikes -- I can't believe an entire month has gone by! Holidays, visitors, crises... It's been an interesting time. So anyway...

Charlie, thanks for the offer to look over Kaelin's diet. For the most part, I have a pretty good idea of the foods that cause her distress. I was mostly curious about how often people eat (or serve their kids) foods knowingly off the diet. I'm trying to figure out if it's better to go off plan occasionally or stick to it as much as humanly possible. I mean, I know we have to bend when eating out, but should I at home?

I mentioned that Kaelin ate things that she discovered around the house, but I probably should have clarified that it wasn't just granola bars and candy. She ate a ton of medication as well; over-the-counter acid meds, like chewy Tums and melt-on-your tongue cinnamon strips for gas. Thankfully I found out about this after she only ate two of the kid's grape Tylenol -- she had a pack of 40. Yes, the medication was stored out of reach of kids but she found it nonetheless. And frankly, she never, ever did anything like that as a toddler or beyond so I never though to be concerned about a 10 yr old.

After discovering her stash of mostly wrappers and a few odd pills left, she said she ate it because I've taken everything and this tasted good. Scary, scary, scary. And absolutely devastating. That was when I decided to relax the rules a bit. As an adult, I understand that giving up these foods all at once is the best way to go -- the first few weeks are hellish, but then the cravings stop. But for a kid... This is just brutal to be facing the rest of her life without her favorite foods. And since we've never gotten to the point that her stomach has stopped hurting, Kaelin doesn't seem to have a huge incentive to stop eating foods that hurt (mostly because she doesn't know it hurts -- it's all normal to her.)

Charlie, I'm intrigued by your post about Acquired or Hereditary, but I do not have the option of replying or even starting a new thread. (The entire Welcome to the Board Section won't let me post anything.) But I've been wondering about that question with Kaelin. I'm almost certain she's always, always, always had problems with all of these foods. Does that make FM different than someone who acquired it after an illness? I just feel like Kaelin will be dealing with this forever -- I have my doubts that she'll be one of the people that seems to heal. And if she is facing this forever, should I be limiting her food completely, letting her have some foods so she doesn't eat more destructive things or trust that as she gets older, she'll make better choices for herself based on how she's feeling after eating forbidden foods. Sigh.

[Charlie Arnold]

Hi Fmmom,
good to hear from you, was wondering how things were going.

Do you think the eating stuff that's wrong is partly ADHD too, it sounds like the sort of thing ADHD kids do alot of, living for the moment rather than thinking of the consequences. You made me chuckle with finding the wrappers, I excavated Megs bedroom recently and found a little squirrel had been in there - loads of wrappers and mini cereal boxes explain the dodgy days we have had. and yes it is scary when they do it esp medicine, I found Megs had been swigging her antihistamine medicine she has incase of wasp stings. So much for childproof medicine bottles!!!!!
It is so hard this treat thing, I've had a run in with the school slightly because her new teacher wanted to give them chocolate and sweets to fill a stocking they had made and didn't want her left out - but she is used to it and is healthier without it. But I gave in and said to try it - I'll let you know the results at the weekend!!!? This is the first year there has been the possibility of having any, before Megs was on the HFI diet so nothing was available in England in the sweet range so she had no choice. I just hope they don't have to put her back on the diet as now she has had a taste for it all.

I like you am trying to decide whether they are better to cheat the diet sometimes just to fit in especially when eating out. I suppose it depends how bad the symptoms are. One problem is the reaction can be delayed by a few days so they (especially our 2) are not going to equate tummy ache with what they ate a few days before. something to be said for the anaphylactic shock of some allergies, scary but at least it would frighten them off trying it again!!??

I don't think Megs will ever be able to have alot - she is farting for England again on small amounts I guess it is just working out that safe balance and enjoyable food. I guess she has had it from birth therefore must be missing the carrier rather than an IBS more reason. I'll double check the welcome board, I thought I had only locked the welcome post so that it always stayed easy to read but maybe its locked the wrong bit.
Going to change the colour scheme too, tone it down a bit for Christmas. I left it for a while as it has got the board noticed but don't want to blind everyone!!!! According to a new website started you need sunglasses for this one!!!!!

Anyway, good to catch up, keep up the good work and keep plodding on, you will get there. I will try and post some Christmas recipes soon.

[Charlie Arnold]

Oops, yes, had locked the whole section, now unlocked, I did wonder why no one had posted their thoughts on that question. Hopefully should be open to all now.